Persistent Postural-Perceptual Dizziness (PPPD)

Dizziness can have many causes and can be hard to diagnose. A diagnosis can be complicated further by an existing vestibular condition with vertigo. So PPPD can be tricky. When dizziness is part of a functional disorder, it is called PPPD (Persistent Postural-Perceptual Dizziness) and is classified as a vestibular disorder. Assuming you can even manage to describe the dizziness adequately. It is incredibly hard to do. To get that sensation in words so it makes sense to the neurologist or vestibular specialist treating you.

PPPD includes “sensations of rocking, unsteadiness, and/or dizziness with vertigo lasting 3 months or more. Symptoms include non-vertiginous dizziness and unsteadiness that is increased by a person’s own motion, exposure to environments with a complex or moving stimuli (e.g., stores, crowds), and performance of tasks that required precise visual focus (e.g., reading, using a computer).” Source

A serious problem for me right now is using the computer, for example. Complex environments have always been a problem for me after diagnosis. I have a constant dizziness that can be severe when triggered. And unsteadiness with it as well.

Symptoms

• Persistent sensations of rocking or swaying, unsteadiness, and/or dizziness without vertigo lasting 3 months or more. Going on 2019 for me.
• Symptoms experienced on most days. Intensifying as the day progresses. Severity can fluctuate. This is accurate for me. It is most days. It does vary in intensity depending on triggers. It does get worse as the day goes on.
• Present for at least 15 days in a 30-day period, with most daily occurrences. For me, it used to be every single day, worse as the day went on. I would definitely say at least half of the 30 at the best times. Likely back up to daily at this current point.
• Symptoms are typically worse with:
  1. Upright posture (standing or sitting)
  2. Movement of the head or body, whether self-generated or caused by external forces (being in a moving vehicle)
  3. Exposure to visually complex or motion-rich environments (busy patterns on walls, complex patterns on screens, going shopping, crowds)
• PPPD typically starts shortly after an event that causes acute vertigo, unsteadiness, dizziness, or disruption of balance such as:
  • A peripheral or central vestibular disorder (e.g., BPPV, vestibular neuritis, Meniere’s disease, stroke)
  • Vestibular migraine
  • Panic attacks with dizziness
  • Mild traumatic brain injury
  • Dysautonomia

For me, it was the vestibular migraine that is my trigger. And continued trigger. I received vestibular rehabilitation, but it didn’t ‘stick’. I had some history of another vestibular event of unknown origin, that could have been the trigger as well. Not sure.

It rarely starts slowly or gradually or without a triggering event. Anxiety and depression are comorbid with PPPD. And when it started for me, it was a sudden and strange thing. These brief, sudden, unexplained episodes of dizziness caused a milder, lingering dizziness for hours afterward. That persisted. Got worse. And then triggered other symptoms, such as a sensation of motion. Unsteadiness. The ground-moving sensations. All constant sensations.

• 45% of patients had clinically significant depression;
• 60% of patients with PPPD had clinically significant anxiety;
• 25% of patients had neither

Patients with PPPD may have a history of vertigo, suggesting a previous vestibular dysfunction. Patients typically exhibit chronic symptoms due to accumulated exposure to motion stimuli, making them more susceptible to recurrence of symptoms.

It seems like with PPPD that the filters we have in our brain to suppress movement sensations go all wrong. “Instead of the brain being able to balance everything up and give you a nice smooth feeling when you are moving, the person can feel a sense of movement that they shouldn’t.” Source. And we notice these sensations, which then turn up the ‘volume’ on them.

This extends to motion around us. We become sensitive to movements there as well. Call visual vertigo. This is where we feel the intense discomfort in cars and moving vehicles. With complex patterns. Crowded places and too stimulating places. This can lead to avoidance, but I never avoided, so I don’t see that as necessary- just that anxiety is possible with PPPD. Neck motions seem to aggravate things and may lead to less neck motion.

We also feel brain fog and poor concentration. Fatigue and cognitive fatigue. A feeling of woozy ‘cotton ball’ feelings. Honestly, when it gets severe or even moderate the fatigue from just trying to focus through it can be extreme.

Another thing that can develop is dissociation. Feeling really zoned or spaced out. Maybe you are disconnected or floating. I feel very zoned out sometimes. I can’t seem to shake it.

We feel like we are walking on spongy ground. And, man, that can get bad. I say its like a marsh. But it can also lead to sudden drops on one side into, nothing.

PPPD is a problem with motion sensitivity. Problems with light and sound sensitivity or even nausea from smell sensitivity are more common in patients with PPPD. Source

Treatment

Treatment can be complex, especially if you have an existing vestibular disorder. In my case, vestibular migraine disease.

1. Vestibular Balance Rehabilitation Therapy (VBRT): in a 2014 small study,
   VBRT reduces the severity of vestibular symptoms by 60%-80%,
   VBRT may be effective in reducing anxiety and depression in PPPD;
   Patients should continue VBRT for 3-6 months to receive maximum.
   
2. Medication: clinical trials for the use of SSRIs
   Primary symptoms were reduced by at least half in 60%-70% of patients who entered the trials and 80% of patients who completed at least 8-12 weeks of treatment;
   Dropout rates due to medication intolerance averaged 20%;
   People who don’t respond to one SSRI have a good chance of responding to another one. Comorbid anxiety and depression were improved. Treatment must be maintained for at least 1 year or more to minimize relapse;
   Benzodiazepines and other vestibular suppressants are not effective as a primary treatment for PPPD.
3. Counselling- which isn’t as effective for long-term PPPD like mine. But more effective for newer symptoms.

So that is what PPPD is. And it can be so very intense and at other times present, but easier to tolerate. It makes it hard to read or use the computer. Harder to be in complex and stimulating environments. The way I see it, I don’t avoid those things- I feel like I am trying to retrain my brain slowly. But I can and do space out.

Sources:

PERSISTENT POSTURAL PERCEPTUAL DIZZINESS (PPPD)

Vestibular.org

Living with complex vestibular issues